Thursday, February 21, 2013

What were using .....

I get emails about what we are using for Mason's developmental progress.  So I decided to do a post about what we are using!

For Fine Motor skills we play with lots of blocks:

These are the main 2 kinds we have.
Wood Blocks


 Fisher-Price Laugh & Learn Apptivity Case

He enjoys playing with the apps and watching the screen.
We mostly use this for Dr. appts ( to keep him busy)

He has really enjoyed his Earlyears lil Shopper Play set

Earlyears Lil Shopper Play Set
He enjoys taking the "groceries" out of the bag, and each item does "something". 
 The milk carton opens and has a mirror, apple has a rattle, banana peels (and has a krinkle noise), Orange opens and has a rattle, and lettuce has krinkle noise.
He has really enjoyed this set ( I keep the milk, banana, and orange in the diaper bag for quite play during church)

Great Grandma got him the Kidooie Peek N Peep eggs

I cant find a pic , but these are another toy that Mason LOVES
Its a great fine motor toy.  He enjoys taking the tops off the eggs, opening the carton, and trying to put the tops back on.
This toy will also grow with his development.  The eggs have a shape on the bottom and only fit in a certain spot. So later he can work on fitting the shapes in , colors, and matching the faces with the eggs. (Colby plays with this toy as well at almost 4yrs old and he enjoys it!!

Pretty simple to explain... He loves opening the doors and moving the magnetic animals around.



We also got several Leap frog toys for Christmas that Mason really likes to play with as well:

AlphaZoo Spinner


 He likes the music and pushing the big yellow button to make it spin

Next I will post on the things we are using to work on sign language with Mason.

Have a Great Day!!

Friday, February 8, 2013

Congenital Heart Defect Awareness Week

As many of you know, Mason was born with a Congenital Heart Defect.  He was born with Atrial Ventricle Spetal Complete, and under developed heart valves. 

Mason being born with a CHD makes him 1 in 100..... Why 1 in 100? 
 *Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD

After finding out about Mason's heart condition, we knew he would need open heart surgery to save his life.  If we hadn't found out before he was born that he would need extra medical attention,  Things could have taken a turn for the worse.   We are thankful to our Drs , that we all knew what was going on with his heart, and knew what needed to be done to save his life.

*Congenital heart defects are the leading cause of all infant deaths in the United States

 When we found out about Mason's CHD at the same time we found out he would have Down syndrome.  The CHD he has is actually common in children with DS.  That was one of the leading factors (before our amnio) that pointed towards him having Down syndrome. 

*Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities

Now here comes the shocking facts of Congenital Heart Defects:

* Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood 

*More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime

 ( Mason is lucky to have been able to have his heart repaired at 5mo old, after being in heart failure at 5wks old.  If he had not had his surgery, he would not be alive today.  He life depended on that 8 hr surgery. ( longest day of our lives).  He will have echocardiograms, EKGs, and Cardiologist visits for the rest of his life.  He heart may need another surgery when he is older ( were looking at around 12 or 15 yrs old ). 

*There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them

We do know that Masons type of  heart defect goes hand in hand with him having Down syndrome, but they do not know the actual cause of his heart not fully developing. 

* In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD. 

As a Mother of a child with CHD, I often wonder why there isnt more funding, research, awareness, and public knowledge of CHD.   We knew nothing about CHDs, untill we were told that Mason had a heart defect.  Now we are making it our goal it educate as many as we can about CHD..... because the more people know, the more lives we can save.


Tuesday, February 5, 2013

A baby after a child with Down Syndrome

As many of you may know , We are expecting a little baby boy in May.

When we got the surprise that we were expecting again, We were a bit shocked to say the least.   We had talked about possibly having a 3rd.  That maybe a younger sibling would be good for both boys.  But when we got the positive pregnancy test.....  I was a bit freaked out.

We found out at our 20 wk ultrasound that Mason had cystic hygroma, a congenital defect (we were told most likely Down syndrome), and a heart defect. 
Our world as we knew it was shattered.
We were told he would not survive.

We started planning a memorial service for him ( I remember calling funeral homes asking how they do a memorial/ burial service for a baby...Thinking of this still makes me cry).  We let our family know what we wanted done , so when the time came, we wouldnt have to think of what to do.  

For the following 14wks after that day , we waited.  I had 3-5 appts a week.  All to monitor how he was surviving.  All we could do was sit , wait , and pray that he would pull through.   Finally we started getting better  news (always small bits).  We finally got to start planning his nursery and not planning a funeral. 

I went through so much emotionally during his pregnancy, that once he was born, I did not want anymore kids.  NOT because Mason has Down syndrome, but because the pregnancy itself ( cystic hygroma, heart defect, pre term labor, premeture birth, ect) was just so hard.   Over and over I kept telling Cory, no more... I just cant do it again.  

The first year of Masons life was a whirlwind.   We had heart failure, Open heart surgery, therapies, dairy allergies, ect.... You name it, we went through it!   Also through that first year, my heart took a beating.  I had to deal with the emotions of my child having to endure all these things, while others just seemed to skip through life without a care.  They had babies who didnt need life saving surgeries, or therapy to learn to sit, or be on medication for the rest of their lives.  
And looking back now, my heart was bitter.  It felt unfair at times, that we had to fight to get him here... while others just continued on with their perfect life. 

I really think it took a good year for my heart to heal. 

Finally once my heart had healed, I actually started listening to my husbands requests..
He wanted another child.

His reasons for having another one were good, but I wasnt convinced yet.  
He said it would be good for Mason to have a younger sibling to help push him.  That It would be goo for our whole family.
In my heart I knew he was right... but I was still so traumatized by Masons pregnancy that I just didn't want to do it again.

After a few more months, lots of praying, and lots of long talks, I felt like we might EVENTUALLY be ready to try again....

well God had other plans in mind.... We got a big surprise In September!  Im pretty sure God took it into his own hands ( because I may never of been 100% ready). 

With the excitement came a whole new set of fears....
Would this baby have a heart defect? Cystic hygroma? Down syndrome?

We knew that if we were to have another there were risks....
We have a 1% chance of the baby having Down syndrome, Cystic hygroma, or a heart defect.  We have that 1% because we have a child with those conditions.  So there is a chance it could all happen again.

Now the Down syndrome isnt was was scarring us, it was the heart defect and CH.   Those were the big things that threatened Mason's life in utero.   ( We know that down syndrome is not a curse, and that if we did have another with DS, we would be just fine!)

So I pretty much held my breath this whole pregnancy.
Never getting fully attached, always wondering if this would happen again.

Well last Wednesday we had our " big ultrasound".  In the same room we had Mason's ( where we learned all that was going on with him)   I was so worried going in, trying to brace myself for bad news.   The tech (HI Jen!) who did Mason's sono did this one as well.  I felt like I was right back in the same place and time.   My nerves were on edge as we began.   Jen asked how the pregnancy was going, how mason was doing. ( I think she could tell I was really nervous) As she started, the screen fill with a beautiful pic of our sweet baby... and I smiled.  I knew right then, no matter what the outcome was, all would be ok.  As I am watching the screen, she starts scaning the heart.  There in front of my eyes is a perfect 4 chamber heart, beating with a perfect beat.  Thats when the tears started,  I couldnt help myself.   That tiny heart was one of the biggest worries I had, and to see it , beating perfectly... words cant describe.   The rest of the sonogram went smoothly and Jen pointed out everything as she went along. And when she was done, she said the baby looked perfect.

Those words brought some sort of comfort ( no heart surgery, no lifetime medications) but not excitement.  We did not cheer that this baby wouldn't have Down syndrome, but we were simply relieved to have a healthy baby ( no heart surgeries!)

So while we feel blessed that this baby seems as healthy as can be, you wont find us celebrating that he doesnt have down syndrome... Why , you ask?... because we know its a blessing , not a curse.